Letter to a New Parent of a Child with a Disability

Dear new parent,

You may not be new to parenting, but if your child has just been diagnosed with a disability or developmental delay, you are likely new to disability parenting (what some call being a “special needs parent”) — a phrase that, as you’ll find with so many words, doesn’t come close to describing what it means to love a child whose strengths and needs now have a medical term attached to them.

In the beginning, many of us felt quite honestly devastated or terrified. Some of us were relieved because receiving a diagnosis — especially if we had been waiting to learn the words that described what we didn’t yet understand about our child — meant we could finally get them the help they needed. But mostly, we remember feeling so much sadness thinking about the challenges our child would face as they grew, and how much harder they would have to work than other kids their age to do the kinds of things you need to live even an ordinary life.

As your child grows, with time, you may realize that you no longer feel as devastated as you did when they were young. Be gentle with yourself now, and keep this in your long view. The early years are hard. Trying to get Medi-Cal on the phone is definitely not going to make your day. But we’re here to tell you that some of this will get easier.

Your child’s diagnosis will change you. It may also change your partner, your parents, your siblings, your child’s siblings, your aunts and uncles and in-laws, and many of your friends — though it may not change everyone in your circle in the ways you wish it would. One of the more difficult aspects of parenting our extraordinary kids is having to deal with disappointing people. While compassion should always be a two-way street, we will say this — luckily, you can choose your friends. One of the things that makes this whole process easier, and which we hope you will do as soon as you can, is to meet other parents raising kids with disabilities.

You may also notice that comparison — that awful human pastime — can be particularly difficult when it comes to parenting kids with disabilities. It can be agonizing to see a child the same age as yours doing something like walking when your child can’t yet hold up their head. It can be just as awful to watch your child do something that a friend’s child cannot. If you are the parent of a child with a learning disability, supporting the parent of a child with drug-resistant epilepsy will mean learning how to listen (and then some). What we’re saying is that this parenting thing can feel impossible, and so is a lot of parenting advice! Discard the advice that doesn’t buoy you. Find your people. Support each other, share and receive what resonates with you, and leave the rest for others who might need something different.

You are probably going to need (and want) a lot of guidance and support. Raising a child with disabilities often means gaining a team of professionals to help you — occupational therapists, physical therapists, neurologists, urologists, you name it. Trust us — you will find partners in many of these people, and you will learn from each other in the process. If you don’t find the team of professionals you want — the kind who care about your child’s progress almost as much as you do — ask other parents, who can refer you to their best therapists, doctors, advocates, and even an attorney if you need one.

All of this can make navigating the systems that provide the support your child needs both rewarding and incredibly time-consuming. Navigating these systems can sometimes feel like the hardest part of being a new disability parent. You are going to learn more than you want to know about health insurance, public benefits, special education, and all the services provided by your county and state. People are going to tell you no when you know they are supposed to say yes. You may not catch it at first because you don’t know what to expect. Then, you’ll see that those who are supposed to help don’t always live up to their title. It will be infuriating. It might transform you into “that parent” who advocates for their child with unapologetic relentlessness. You might not like being “that parent” even if you feel you have no choice. That’s okay. You will find your own way.

That’s not where the change will come from, though. Being a parent means taking time to nurture and raise another human being, mainly because of the joy that comes from watching a small person grow and become unique. One of the things we’ve learned as parents of children with disabilities is that joy is proportionately related to the effort you put in. For every challenge your kid has as they work toward learning how to eat, move, communicate, learn, and so on, you will have to work exponentially harder than the typical parent. And when your small person finally reaches that uphill goal, the joy is exponentially greater, so overwhelmingly huge, that there is really nothing like it. You will find yourself celebrating the weirdest things: that your teenager wrote you a text message, that your 8-year-old told you they needed the bathroom, that your 5-year-old got through a day of school without a phone call from the office.

That’s what changes you.

Your view on the meaning of love and achievement will be different from most people’s. We’re not saying it’s going to be easy. Nothing worthwhile ever is. But you will find so many reasons to celebrate along the way.

Sincerely,

Your fellow parents at Undivided